Here is the update as promised from Adrianas GI appt, it all went well. She did not gain any weight but loose maybe .5 or about the same from last month I was told.She is now in the 75% for height and weight but was in the 92 so she is getting proportional again but still growing in length. As for any changes on her TPN, there was nothing it will continue to be the same and omegaven the same. There will be some changes on some meds we will be adding 2 capsules of imoduim to her feeds which help with controlling diarrhea.The purpose is to slow the transit down to give her intestines more time for absorption well that is the idea lets just hope it does work that way. We will also start to switch out her pregestimil formula with pediasure, I will start adding 1 oz of pediasure into her 20 hrs of pregestimil feeds and see how things go with that. If all goes well and dont see any major changes we will keep going untill eventually we have gotten rid of her pregestimil and only on pediasure. That is her GOAL this year to be off pregestimil. Pregestimil only has 22 cal per oz and pediasure has 30 cal per oz so it will help her get off TPN just that much faster if tolerated. If all works out and she is on pediasure then we may start adding some food to her formula and see how that works. We cannot now since her formula is predigested so it might mess everything up instead of help. I guess we will see how things continue to go and cross our fingers that it all works out for the best. Adriana is getting big and things are getting better for her. As for potty training will be very soon but not sure quite yet, her dad thinks shes too small but if I let him tell me when he will continue to tell me shes to small I guess she will always be the baby no matter what.

I am trying to keep up with the blog but its harder as Adriana is growing well 2, she is all over the house and gets into things she shouldn't be. She is doing great so far, nothing new with her. She will be getting a assessment with speech therapy to see if she qualifies for those services. As for OT i have finally found a organization that is free of charge who does it in home. There is a waiting list tho so she is currently on it, she is still progressing in feeding tho, shes very interested and I cannot eat anything in front of her without her wanting it as well. The only thing she may not eat is yogurt and no one eats that in front of her. She does swallow some of the food after she kinda chokes on it, she does not know how to chew yet but has gotten the swallowing part down. She drinks water and of course loves coke, she only gets little tastes tho mostly water is all she gets and of course some fresh drinks as well. On the other hand she l0ves music, very loud and dances to it, she also sings it. She does know many songs she hears over and over and knows when to put the words in, other than that she just lip sinks.I believe we will be seeing her GI this coming week and lets see how much she weighs. I hope she has gained some weigh in this past month as they did drop her dextrose from her TPN from 14 to 11.5 so lets see how that goes. As for everything else I am also sure she is taller, thinking of questions to ask her GI. She has started back on her FLagyl this week and will be on it for 3 weeks hopefully this will help with increasing her gtube feeds. Adriana is at 31ml/hr, I tried advancing to 32 but I saw the big difference and had to bump her back down the same day. Maybe we will have better luck next time. As I am seeing this is a very slow process even tho I wish it was something fast. I guess I just have to continue to be patient and hope things ease on and she continues to be healthy.I will update after we see our GI and get some feedback from him as to how he feels things are going...

New Year..in the snow

our weekend up north

It has been a very long time, about 3 months since our last post. Many things have happened since then of course, nothing but good things. Adriana is walking, she started with steps at the end of April and is walking now.She has been for a while now, she says many words and can count to 3 in both english and spanish. I cant get her to 4 quite yet, she says many words and understands basically everything. She is on tpn/omegaven 10 hrs a day now and her feeds are running for 20 hrs a day at 31ml/hr. She is allow to have a 4 hours brake. She is doing fairly well with her feeds and advancing and tolerating that as well. Our goal is 55ml/hr to get her off TPN. We are getting there, slowly but surely. Our GI is very happy with Adriana and how well she is doing, transplant is not even in the plan, nor no where near for right now. our last visit we went down on her TPN as she was gaining too much weight, which is great it means something is working right??We will just continue to keep advancing her feeds as she tolerates it. She gets flagyl for 3 weeks and 1 week of, to help with the bacteria overgrowth, which is helping with her feeds and advancing. I am very proud of Adriana and how far she has come, she is 2 now and a great baby. Of course she enjoys to push my buttons now and then but its ok, its all worth it. She enjoys listening to music very loud and dancing,she has some great dance moves.